Happy New Year: Finally The Specific Carbohydrate Diet in a Mainstream Medical Journal

Several years ago, when I was working in my own nutrition practice, I spoke to a new client with a little boy who had been diagnosed with moderate Crohn’s disease.  His parents had taken him to see one of the country’s foremost pediatric gastroenterologists (according to the doctor himself), who recommended starting treatment with a serious immune suppressing drug.  These drugs are known to have potentially major side effects and also, by suppressing the immune system, put patients at risk for developing cancer.  The parents of the 5 year old were uncomfortable with the prescribed treatment and sought me out, to learn about any possible natural treatments that might help.

In 2002, my son, Alex, was also diagnosed with inflammatory bowel disease.  He ended up on a wide array of medications (6, actually) including 6MP, a chemotherapy drug, which may “lower the ability of your body to fight infection” and may “increase your risk of developing a tumor or other cancer.”  After a year with no real improvement, our gastroenterologist called me to discuss inserting a feeding tube, as Alex was spewing out both ends.  Instead of subjecting my son to that awfulness, that day I decided to try him on one last diet which another parent had told me about several years before at an autism conference:  the Specific Carbohydrate Diet (SCD).

With the first meal, Alex stopped vomiting.  But by 3 months on the diet, with Alex’s diarrhea still out of control, I was losing heart.  I posted on a Yahoo board, looking for any kind of advice, and fortunately – one of the truly blessed days of my life – my message was seen by Elaine Gottschall herself, the author of Breaking the Vicious Cycle: Intestinal Health Through Diet, the book which lays out the specifics of the SCD.  “Call me,” she wrote, sending me her number.

Elaine Gottschall was a force of nature.  I knew nothing about her that day I first called, and when I hung up, I thought, “Wow!  That woman has more energy than everyone I know combined!”  It turned out that Elaine was 82 years old. For decades, she had been fighting the medical establishment, trying to get them to listen to her but Elaine was “only” a mom.  She had also done years of research on the diet, after her own daughter was cured of IBD.  SCD can cure inflammatory bowel illness, she told doctors, and here are the reasons why.  And yet, she was mocked, scorned and laughed at.  When Elaine died in 2005, two years after I had the incredible good fortune of becoming her friend, millions of people around the world – whose lives she had saved with her book – mourned her.

With Elaine’s encouragement, I stuck with the diet, and within two weeks of that phone call, Alex went from having 20+ liquid BMs a day to 6 nearly-formed ones.  Within 6 months, his bowels were completely normal.  Like Elaine’s daughter, after a few years on the diet, Alex was entirely cured of IBD.

I loved Elaine with all my heart.  She was truly a hero.  In the face of overwhelming odds – faced with nothing but derision by the mainstream medical community – she never wavered.  She KNEW she was right.  I knew she was right.  After she passed away in 2005, I did what I could to forward the cause of SCD, informing and educating other parents in any way I could.  Having witnessed the miracle that is SCD first hand, I switched careers, moving from special education to nutrition.  I wanted to give other people that experience – to end their suffering.

In my next few posts I will review more about SCD and how it heals the gut flora, but for the moment, let me just talk about a study[i] that was just published this past week in the Journal of Clinical Gastroenterology.  As incredible as it may seem – remembering that there is no pharmaceutical money behind studying diet – a doctor at the Seattle Children’s Hospital ran a small study on 10 children with IBD.  After only 12 weeks – which is an incredibly short time on SCD – 8 of the 10 patients showed significant improvement and achieved remission.

REMISSION IN 12 weeks from what is considered an incurable illness.

If ever there was someone who deserved a Nobel Prize in Medicine, it is Elaine Gottschall.

So, how did the story end, with my little client? Mom and Dad decided to go with a 3 month trial of SCD before starting the medication.  A week or two later, I received a phone call from their gastroenterologist.  While superficially polite, there was no doubt that he was marking his territory:  he was condescending in the extreme and was NOT at all happy with me.  After all, he was a famous doctor and I was – not.  I calmly told him, after listening to him tell me all about “evidence” for this and that, that how to treat the child was not his or my decision, but that of the parents.

Three months later, the child showed no signs of IBD.  And no – I never did hear back from the doctor.  He told the parents to “keep doing what they were doing” but couldn’t be bothered to call me and learn a darn thing about how, perhaps in the future, he could keep other children off these incredibly toxic medications.

I can only hope that this study, small as it may be, brings SCD into the mainstream medical community.  So much suffering could be ended.

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[i] Suskind, David L et al. Clinical and Fecal Microbial Changes With Diet Therapy in Active Inflammatory Bowel Disease. Journal of Clinical Gastroenterology, 2016

10 Comments on “Happy New Year: Finally The Specific Carbohydrate Diet in a Mainstream Medical Journal

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  7. Hi,
    I have a 31 year old developmentally delayed, autistic son that had symptoms which were apparently poorly understood by his doctors all his life. The symptoms were more severe in his early childhood than now. The doctor and specialists never mentioned those specific results that are the subject of your blog. I guess they didn’t seem important.
    Now I’m wondering if he is still being affected. I wonder if the damage was done that can’t be undone. I need to somehow get a specialist for him and pay out of pocket for the necessary testing to find out. Our Medicaid-based HMO will not help in this regard.
    If my son still has D-Lactate Acidosis issues, is it a “better late than never” moment or is it too late? I hope that this is not another missed opportunity to help my son. I’ve had so much to grieve and regret as it is.

  8. Hi Marge.I don’t believe it is EVER too late. My son is 25 and has made more progress this year than he ever has before. The problem you face is finding anyone in network to work with. I never have – I’ve always had to pay out of pocket for doctors who know what they are talking about. Fortunately, things like the specific carbohydrate diet you can try on your own….
    Judy

    • Thank you for the speedy reply and the encouragement to keep going. I just don’t know how to go about the process of finding the right doctor, getting the proper testing, etc……
      I can get the book and approach it that way. I just tired of not knowing anything, guessing at everything and out of frustration, doing the “Shot-Gun” approach with no real way of being able to refine how to treat my son…..

  9. Get Breaking the Vicious Cycle, Marge, and if you want, you can also get my book, We Band of Mothers: Autism, My Son and the Specific Carbohydrate Diet. (All proceeds go to the Autism Research Institute, so you’re also making a charitable donation!) Everything IS shot gun right now, unfortunately, since really – science does not yet have the answers. The best we can do, as moms, is look at the clues our children’s bodies give us and try to figure things out from there.

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